Resource Review: The Caregiver’s Notebook

 Resource Review: The Caregiver’s Notebook by Jolene Philo

After just a few months of caregiving for a medically complex child, I had tried several different ways to organize Emily’s information before I arrived at a method that has now worked for us for many years.  Recently Jolene Philo shared with LifeLine her new resource, The Caregiver’s Notebook, and I know it will be helpful for many families facing the same confusion that I did in those early days.

The Caregiver’s Notebook is a spiral notebook with multiple divisions for organizing various types of records in one handy location.  Each topical division or chapter is tabbed for quick and easy access.   Let’s take a quick tour and I’ll point out the highlights and some things that caught my attention because of my own documentation needs.

• The Emergency Information chapter doesn’t just include caregiver, emergency, and medical contacts, but it has legal and financial blanks as well.
• Next is the Calendar.   Write small because the squares aren’t huge, but families can keep up to 36 months’ worth of appointments in this section!  I keep an online calendar these days because I have so many different things to coordinate and this wouldn’t hold them all, but if you are just tracking medically related things you should have plenty of room.
• Contacts is a great way to keep all of your loved one’s care providers’ contact information in one place. Need a fax number for one office to send information to another?  You can keep it all right there in one place.  Need to contact someone when you are out of town?  Again, all right there in one place.    Thirty-three different care providers’ charts can accommodate more than just the medical list. You could also include educational contacts, community resources, respite, DME providers, or government agencies.
• The Blank Notes section can absorb all of the questions you want to ask at the next appointment, written explanations of answers you received, side effects or behaviors that you need to track, or just notes to yourself about all of the things you need to remember to do when you are finished sitting in that waiting room!
• The Medications category has spreadsheets to track medications and reasons for prescription, dosages and instructions, but it also has a section for Medication pickup and Payment Record for easy medical expense tracking for tax purposes (or when you need to argue with an insurance company!)
• Medical Information includes a current diagnosis list that is actually long enough to accommodate Emily’s twenty plus! I expected to see Allergies in this section, but I was excited to also see “Sensory Sensitivities” included here where a child’s sensory response to a stimuli could be recorded along with the treatment.  Immunizations, dental and vision care, therapies, and hospitalizations have charts to make recording easier.  I would probably have included a Surgeries section in here as well, since those aren’t always the same as hospitalizations (at least for Emily!) but blank note pages at the end of the chapter could actually be used to log that information.
• Insurance Information tab consolidates all of the person’s insurance information as well as logs for recording communication with the insurance companies.
• Legal Documents chapter consolidates where to find wills, living wills, Powers Of Attorney, DNRs, DNIs, special needs trusts, and other legal documents all in one place. My mom has been a caregiver for multiple adult relatives and she frequently needed basic banking information as well.  While you want to be careful about how much private information you carry, I would probably add a list for Banks and basic account numbers in this section to facilitate those who are Social Security or Veterans benefit payees.  While there isn’t a chart prepared for that type of information, there is an extra note page at the end that could be used to keep track of this type of information.
• Routines and Schedules. I must admit, I think I like this section best of all!  It goes deeper than just the facts.  This is where very individual information can be shared.  The cover page of this chapter summarizes it well.  “…Routines and preferences for communication, environment, administering medications, use of medical equipment, personal care, mobility, eating, and sleeping.”  That pretty much covers about everything!  Supplies necessary, where to find those supplies, levels of dependence or independence, likes, dislikes and personal favorites, as well as regularly occurring activities can all be included in this section’s charts.  Families who may not need so much of the medical information could surely use this chapter to chart personal sensory, nutritional, and other preferential information.

Smaller chapters at the end of the Notebook are resources specifically for the caregiver themselves.

• The Resources tab includes pages of online resources and websites split by category.
• Bible Reading Plan includes reading chapters from both Old and New Testament each day.
• Prayer Guides come next. So many times as caregivers, we process emotions that we can’t even give a name.  We long to relate our feelings to God, but can’t even find words to tell or ask.  This prayer guide gives 30 ways to pray for your family along with verses that correspond.   A page of Scriptures to encourage caregivers closes this chapter.
• There is a Glossary of medical and legal terms at the end of the book as well as pockets to hold notes or additional paperwork against the back cover.

So many things I love about this resource!  There are great instructions on how to effectively use each chapter in the very beginning of the book to help you make the most of it.  There are snippets from books, quotes, and Bible verses throughout the notebook as well as tips from caregivers who have experience.  I like that it is spiral, because if a page is no longer pertinent, you can rip it out and file or toss it.  However, in another way, since it is spiral, if you run out of pages, there is really no way to refill the calendar or add log sheets.  Depending on how medically complex the loved one is, this may or may not be an issue for families.  I really appreciate the extra note pages scattered throughout because it offers the opportunity to add information that is more specific to a unique caregiving situation.

I also appreciate that this resource can be used both for children or adults.  So many friends I know are caring for children while also caring for siblings or parents.  While I have one child with significant disabilities, my mom has spent years caregiving for more than one adult person.  At a size of 9”x7”, the Notebook isn’t huge and mom could have comfortably carried multiple with her as she cared for her parents.  The Notebook could fit in a diaper bag, handbag, briefcase, or even in a walker basket or wheelchair backpack without a problem.

So what happens if you split caregiving responsibilities with another caregiver?  The Caregiver’s Notebook is comprehensive enough that it could literally be passed from caregiver to caregiver if spouses, parents, or siblings needed to attend an appointment without the primary caregiver or if a respite provider needed an up to date summary.

I have had a 3” binder of medical history, current logs, and information that we have carried in our van for Emily since she was born.  I update it every year or so (or after a major medical event).  One of my fears has always been that, as much as we are on the road, we will be in accident or something will happen to  where I am unable to share information about Emily with EMTs in case of an emergency.  For almost 16 years, we have carried a binder in our van with a tag attached to her car seat or wheelchair that directed emergency personnel to the binder under the front passenger seat.  Families could actually use a second copy of The Caregiver’s Notebook to summarize basic information and do the same.

Thank you, Jolene Philo, for a really solid resource to help caregivers consolidate and organize!  Now that Emily is older and more medical stable, and now that medical records are more easily accessible in a digital format between medical providers, I could easily see myself transferring summaries of information in that big binder that has served us so well into The Caregiver’s Notebook.  It sure would be a lot easier to haul to appointments!

You can purchase The Caregiver’s Notebook on Smile.Amazon.com (Be sure to use AmazonSmile and support LifeLine with your purchase!)  You can also find it on  ChristianBook.com, or BarnesandNoble.com (Get to these through www.goodshop.com and support LifeLine with your purchase!).